A Message from Rabbi Peter Kasdan
Rabbinic Advisor, Jewish Genic Disease Consortium
In the course of my rabbinate at Temple Emanu-El, which began in 1973, I buried several of my students whose lives were shortened because of a particular Jewish genetic disease: a young man with Bloom Syndrome, a young woman with Gaucher, and another young man who died from Cystic fibrosis. Their lives touched many people in our Temple family, so much so that, as a congregation, we probably had a higher-than-usual awareness of some of these diseases. It soon became clear to me that it was essential for my congregants to become aware of Jewish genetic diseases and learn how to prevent them if at all possible. One of the ways I tried to get this message across was to force my high school senior students to study Jewish genetic diseases. I contacted the National Foundation for Jewish Genetic Diseases in New York City, and they supplied me with brochures. I was also fortunate to have, among my congregants, a genetic counselor whose expertise concerning Jewish genetic diseases had an incredible impact on my students.
I felt that becoming educated about Jewish genetic diseases was vitally important. There were so many people – smart, educated people – physicians and rabbis in particular – who seemed totally unaware that these genetic diseases existed in their world. It seemed obvious to me that one of the things I could do to bring about greater awareness of this reality within the Ashkenazi community was to insist that every couple who came to me for premarital counseling was sent to a genetic counselor to be both advised and tested. If they resisted testing, I told them that I wouldn’t officiate at their wedding ceremony; that got the message across that I was really quite serious about this issue. It always worked.
One of my goals is to assist the JGD Consortium in creating that same kind of awareness but on a much larger scale. I want the Consortium to educate rabbis who are already working and serving congregations, as well as rabbinical students. As with my work for the Canavan Foundation, I’m helping the Consortium reach out to my rabbinic colleagues in every movement. One of my hopes is to gain the support of the leaders of North America’s Rabbinic Seminaries and to have them create seminars for their senior students, taught by a team of rabbis and geneticists, so that they be better prepared to assist their congregants once they are ordained.
And it’s not just rabbis who need this training. One of the problems in today’s world is that medical doctors, obstetrician-gynecologists, don’t get much training in genetic diseases, surely not in Jewish genetic diseases. There are many practicing ob-gyns out there who know little or nothing about Jewish genetic diseases. If you want to start a family and you are at risk – and all Ashkenazi Jews are – you need to find an ob-gyn who knows about Jewish genetic diseases and is comfortable referring his or her patients to genetic counselors and testing facilities.
We are beginning to create new programs for the training of physicians – those already practicing and those still in medical school. The Canavan Foundation and the JGD Consortium have been working, in concert, on a Grand Rounds Project, designed to train physicians in both their hospital and medical school settings. The “model” for this has been almost a year in the making and it is about to be put into action. We are also in the process of applying for a large grant with which we hope to offer a program of counseling and testing to 200 college students on a carefully selected Northeast campus. And we are already doing our “homework” on other cities and campuses across North America where these two programs can be replicated in the not-too-distant future. Here, too, the assistance of area rabbis becomes crucial; they can serve as both a source of knowledge and as advisors to physicians and college students within their own synagogue communities.
I was chosen, I think, to serve as Rabbinic Advisor to the JGD Consortium as much for my personal passion on this issue as for my ability to get other people to come on board and serve with me. There is so much we can do to educate the Jewish people but there’s an awful lot of work to do before we get to a point where everyone is aware of their choices. I invite my rabbinic colleagues to contact me, either by email or by telephone; I am prepared to respond to their questions and concerns and to help them make contact with the experts in Jewish genetic diseases in their local/state communities.
Rabbi Peter E. Kasdan
2020 Harbourside Drive #441
Longboat Key, FL 34228
941-387-2188
pekonbase@verizon.net
